chronic illness

5 Insider Tips To Know When Newly Diagnosed With Celiac Disease

 

So you’ve had the EGD, completed the blood work, and your results are in. Your gastroenterologist tells you that you have Celiac disease.

You may fall into one of three categories:

  1. You know all about celiac disease as you have other family members that have the disease as well.
  2. You know a little bit that includes some of the lingo and catch phrases as somehow being “gluten free” was trendy.
  3. You know absolutely nothing.

I fell into the third category. Like all of my other illnesses, I am the only one in my family know to have the disease. When we first suspected that there were gastrointestinal issues going on in addition to the endometriosis, I saw the local gastroenterologist first. At that particular office, when screening for Celiac, they perform the blood work first which tests for the presence of Tissue Transglutaminas Antiboties (or tT-IgA). The second step to confirm diagnosis is by taking a biopsy of the small intestines via an EGD. While 98% of individuals with Celiac disease will test positive for iT-IgA when eating a gluten-filled diet. However, there is a small chance of a false negative antibody test so the only way to truly confirm the diagnosis is by doing the biopsy.

Remember that small, roughly 2% chance I was talking about when it comes to a false negative? I am that 2%.  The bad part was that my first gastroenterologist did not do the follow through with the biopsy so he didn’t catch the Celiac disease and for 5 years, he just kept telling me to “eat more yogurt.” Finally fed up I got another opinion who did the biopsy first followed by the blood work and finally the light came on. I have Celiac disease. The benefit of being in the 98% means that your Celiac can be monitored via blood work but because I am in the miraculous 2%, I have to have an EGD in order to monitor the healing/progression of the disease. All I can say is that at least its only an EGD, not a colonoscopy. Not eating or drinking after midnight is infinitely better than having to survive a bowel prep.

Once the diagnosis was official, I said goodbye to my beloved creme filled Krispy Kreme donuts and Wendy’s Spicy Chicken sandwiches and set to work on figuring out this whole gluten-free lifestyle thing. While there is a part of me that gets annoyed with the gluten-free “trend” as I think it can take away from the real damage that can be done to the body by Celiac disease, the one good thing is that it has helped gluten-free foods, specifically gluten-free convenience foods, more readily available. They may cost an arm and a leg but at least there are options. I’m still waiting on the creme filled donuts and spicy chicken sandwiches.

However, I have picked up 5 insider insider tips for newly diagnosed with Celiac disease.

1) Get thyself to a dietician pronto.

If you can find one that specializes in Celiac disease and/or gluten-free diets, even better. I am so, so glad that my gastroenterologist knew someone to refer me to once I was diagnosed. Not only was she a registered dietician, she also had a daughter with Celiac disease which added great perspective. She could lay out how to balance my nutritional needs and give specific product recommendations. There was some trial-and-error already built in as she could tell me what products to absolutely avoid so I didn’t spend $6 on a box of crackers that tasted like drywall. She could also tell me what gluten-free cheesecake was absolutely worth every penny when I came across it. All the perks of taste-testing without having to do the taste-testing.

2) Create a gluten-free kitchen.

Your whole kitchen doesn’t have to be gluten-free but you at least need a little corner of it to be designated gluten-free. This specific post is just going to cover the kitchen in a broad sense and not include all the details of keeping your kitchen gluten-free while baking, preparing full meals, etc. That post will go up next week!

This is another area where my dietician was able to help me get set up because were so many things I never thought of. For example, you need to have separate toasters for gluten-free and non gluten-free bread. Some people become very sensitive to getting into gluten once fully gluten-free and it doesn’t take much for cross contamination. How often do you dump your toaster upside down to get out all the bread crumbs? If you don’t have separate toasters, all of that gluten would be transferred to you. Another appliance to be wary of in the kitchen would be a countertop deep fryer. You cannot deep fry both gluten-full and gluten-free products in the same fryer. That oil obviously holds on to everything. This is why you can eat french fries out at certain restaurants but not others (for example, Chick Fil A cooks their delicious waffle fries in designated friers so they are not sharing oil with breaded chicken that obviously is laden with gluten. God bless you Chick Fil A!

Another important area of the kitchen to pay attention to that is so easily overlooked relates to condiments or any type of products that you dish out with a knife or spoon. For example, when you open a fresh jar of peanut butter, the moment you take out a spoonful to spread on your regular (non-GF) bread and stick your spoon back into the jar for more, that jar is now contaminated with gluten. The same goes for butter, jelly, mustard, mayo, etc.

There are three easy ways to handle this:

  1. Establish a one knife/spoon rule in the house: You can only stick the utensil in the jar once. If you need more, you need to use a clean one.
  2. Have completely separate jars/tubs of products that are marked gluten-free.For example, you buy a two pack of the small tubs of butter and immediately label one with a sharpie or sticker to be gluten-free. For added precaution, you put the items marked to be gluten-free go in the door of the fridge while the others go on the shelf. This may cut down on the chances of cross contamination but it means you have to buy duplicates of everything.
  3. Lastly is a sort of combination of the two – use squeeze bottle products whenever possible. It prevents cross contamination without having to buy duplicates of everything. While not everything can be purchased this way, many things can and it is a great way to not have to constantly remind yourself every time you reach for something, “Grab the gluten-free. Grab the gluten-free. Grab the gluten-free.”

As I said before, I will go into the specific details of maintaining a gluten-free kitchen while baking next week but these are some more general tips for the kitchen that we may not think of.

3) Spend time reading labels at the supermarket.

The first few times you go shopping gluten-free, build in some extra time to go at a slower pace and read labels. Some supermarkets deserve a big high-five for adding gluten-free markers on the shelves or grouping all gluten-free products together but that isn’t always the case. Also, some items don’t say gluten-free specifically on the box/label but they actually are gluten-free and you could be missing out on something delicious.

Obviously when reading labels, the first thing to look for is the bold print. The top eight most common food allergens are required to be shown in bold print when present. These allergens include milk, eggs, peanuts, tree nuts (such as walnuts or almonds), fish (such as cod or bass), shellfish (such as shrimp or crab), soy, and wheat. Seeing wheat in bold sends up an easy red flag that the item is not gluten-free.

Another crucial item to look for on the ingredients label is the phrase modified food starch. The problem with this phrase is that its too generic. It is very possible that an item labeled as containing modified food starch could be gluten-free and perfectly safe to eat but there is no way to know for certain with just that amount of information. Modified food starch could refer to corn starch or it could refer to wheat starch. You could give it a shot and pray it doesn’t make your gut explode or you could adopt my motto, “If I don’t know, it don’t go.” Brands are finally starting to pay more attention with the rise of both the occurrence and awareness of Celiac disease and are starting to specifically say modified corn starch, etc.

Last thing you want to look for on a label is a little warning that may say “manufactured in a factory that also processes wheat.” That kind of warning indicates that while that particular product does not contain gluten, it is process on the same equipment or in the same area as products that do. It may pass over the same conveyor belts or get packaged in the same area. While there is a small chance of cross contamination, it is important to recognize that there is still a chance. If you are particularly sensitive, that may be enough for you to stay away. The Mayo Clinic provides a great resource on understanding reading food labels if you would like more information.

4) Plan ahead when eating out.

Thank goodness for the power of the interwebs in helping to make eating gluten-free easier when dining out. A lot of big name restaurants provide a gluten-free or allergen-friendly menu on their website so you can be sure that they do in fact serve gluten-free options before sitting down to order. Two of my favorite places to eat out gluten-free is Outback Steakhouse and Longhorn Steakhouse as they both make sure that great allergen information if available for their guests. Some restaurants are taking it one step further and making notations on the full menu on which items are gluten-free or can be altered to make gluten-free.In my experience, restaurants that take the time to add that information in their menus also take the time to make sure that their servers know what it means (my favorites are Fatz and Red Robins). However, if you are talking to your server about your gluten-free meal and it feels like they may not be understanding it (either what gluten-free means or the importance it being gluten-free), ask to speak to the manager. This is one area where you don’t want wires to get crossed. Nothing will break up a dinner faster than getting contaminated and having to sprint to the potty.

5) Check your medicine cabinets and vanities.

When I learned about how many off the wall things that gluten can be found in when I was first diagnosed, I was floored! Common items that can contain hidden gluten are supplements, vitamins, and medications. Again I think more brands are moving towards eliminating gluten but they are not all there yet so definitely double check. A few years ago, I started taking Vitamin B to help with my energy and I remember being so frustrated because I was feeling so crummy. I knew I was taking it exactly as directed. Then on day as I looked further down on the label under the directions, I got my answers. Whoops.

There is a lot of back and forth on whether or not beauty products that contain gluten can have a detrimental effect on individuals with Celiac disease. Some say the amount of gluten would be so, so low that it wouldn’t have any affect plus the fact that gluten cannot be absorbed through the skin. Others say why take the chance. If you know the item has gluten-containing ingredients, just avoid it. Or you can fall somewhere in the middle (which is where I happen to hang out at). Obviously when you have Celiac disease, you worry about ingesting gluten. If it is a products that has the possibility of being ingested such as dental products, lip products, etc, I go the extra step to know for certain it is gluten-free. One other product that I always look to be sure that it is gluten-free makes me look/sound a little crazy but I always check my hair spray. A lot of hair sprays use wheat proteins to help increase the hold and I know it makes me totally nuts but I know I’m not the only one who has had a major coughing fit after choking on some hairspray. Hello, my name is Jamee and I have OCD – Obsessive Celiac Disorder . . . 

 

Tips for living with celiac disease

There are 5 of my best insider tips for those that are newly diagnosed with Celiac disease, have a friend or loved one with Celiac disease, or are considering going gluten-free for other health reasons! What are some of your favorite or most important tips for living Celiac disease or any major illness that requires a major lifestyle change?

chronic illness

Return To Me: Reclaiming My Life

Reclaiming My Life

I created a post in October stating my excited for my return to blogging. I was so ready to get some order and routine back in my life. I had a plan for reclaiming my life but somewhere along the way, things went wrong.

As you may know, I suffer with chronic migraines on top of everything else. I had a neurologist that I loved but he decided to move elsewhere. I ended up seeing a temp neurologist for my regular 3 month checkup while they searched for a full time replacement. Previously we were using optic nerve blocks and trigger point injections in attempts to prevent migraines and/or knock down the frequency. Since I was still having migraines rather frequently, the temp neuro thought that I would be a perfect candidate for Botox so he got the ball rolling.

It took almost 6 months to get the Botox approved with my insurance and to schedule with a new neurologist. My appointment was finally set for November which was consequently within two weeks after my post about making a return to blogging. When my new neurologist walked into the exam room, I about fell off the table for two reasons. Reason #1: My new neurologist is actually my old neurologist whose practice I quit years ago because I felt like he never listened. Reason #2: The amount of needles I saw on the tray he was carrying was terrifying. My round of Botox included 31 injections. THIRTY-ONE. I wanted to pass out.

I got through the first 20-25 shots relatively well but after that I began to feel very sick and weak. My neurologist said that it was not uncommon and that I was actually one tough cookie considering I was able to stay strong as long as I did. The process was far from a walk in the park. I think that migraines and injections are going to be a forms of torture in one of the circles of hell (check out Dante’s Inferno). After what felt like eternity, the appointment came to a close and I was on my way home.

Shortly after that all hell broke loose.

The pain was excruciating and never ending. I have never experienced such intense migraine pain in all my life and it also felt like the migraine extended down my spinal cord. That same throbbing and pressure extended all the way down. It hurt to move. It hurt to lay down. Everything that I have used in the past to ease my migraines was no longer effective. There was no escaping the pain. I couldn’t sleep and there were moments where keeping myself breathing took all the energy I had.

I don’t know what the Botox set off but it was definitely the source as a lot of the side effects I had never encountered until I got the Botox. The neurologist didn’t want to acknowledge it initially but after we tried altering my other preventative medications and having an infusion, he figured it out. He said that it was likely that the Botox was too much for the muscles in the back of my head and neck which then caused the spinal migraines. He ordered a MRI for next week and prescribed me an anti-anxiety medication to see if it would help relax those muscles to decrease the pain which in turn would help me sleep and feel like an actual functioning individual.

For the first time in a long time, I felt like I was finally able to be the wife and mother I had been longing for. I had hope and dreams for what was become. My creativity and inspiration had returned and I made lists of things I wanted to achieve both in blogging and in my personal life. I finally felt like I was reclaiming my life again. I was finally going to be able to return to being me. I was finally going to be able to look into the mirror and recognize the person staring back at me. It felt so good.

Then just minutes ago as I was writing this post, I got call from my neurologist and he wants to stop the medication. Even though I was able to make a long list of all the positive changes it has allowed me to make, he thought it wasn’t worth risking the side effects. When the nurse called to deliver the news I cried on the phone with her and asked that she talk to him again and plead my case. I have worked hard with my pain specialist to wean off 80% of my pain medications and have stopped two others that were not nearly as effective for my fibromyalgia pain as the new medication.

I had all intentions for this post to have a happy ever after ending with balloons and confetti. I felt like I was finally reclaiming my life and couldn’t wait to tell you everything I had planned. I still have a lot of plans that I will definitely be sharing with but first, in order to continue reclaiming my life, my first order of business is to pick up my toolbox and go to work as my own advocate before that reflection in the mirror starts to fade.

I refuse to give up.

 

AWESOME UPDATELater in the afternoon after I published this post, I was able to have a conversation with my doctor – a real, honest, raw conversation – and he is extending my prescription at least until we get my MRI results back (he doesn’t think there is a tumor but is concerned about possible fluid buildup causing pressure). Once we have the results, we will sit down together and go over everything in detail and come up with a plan together on how to proceed! A major victory for the spoonie team! This is proof of important it is to become your own advocate. Make sure your voice is heard. Whatever it takes. Don’t worry about being annoying or inpatient. The nurse kept trying to end the conversation but I knew I had to finish and say what I needed to say. I wanted to be sure that everything was out on the table and in this case, it worked. Advocacy for the win! Now that hope is restored and I’m feeling like a chronic badass, I can’t wait to share what is in store for the future tomorrow!

chronic illness

4 Things You Need In Your Advocacy Toolbox

When you get diagnosed with a chronic illness, the first thing you need to do is learn how to become your own best advocate. Actually, first, you need to allow yourself to take it all in. Get upset. Or angry. Cry. Throw something. Eat a banana split (or two).  Then, when you are ready, pull yourself together and decide that you need to be your own best advocate.

These are the things you need in your advocacy toolbox:

1. Research.

I’m not taking about straight up Dr. Google or even Dr. WebMD because they will have you convinced that you are dying of rare condition that will have you bleeding out of your eyeballs any second. Don’t get me wrong, the internet is a great place for research but be sure to check your sources. Read books. Keep up to date on the latest research. You can set up Google alerts to be notified if posts or articles containing your chosen keywords (such as endometriosis research or gastroparesis treatments) are published. Blow your doctors away. By arming yourself with this knowledge, you are able to take a more active role in deciding your treatment plan because you know what the options are. I had to learn the hard way. One of the biggest regrets of my life was choosing to take Lupron. I hadn’t been diagnosed with endometriosis long and hadn’t learned better yet and by taking that medication, my body has been damaged for life. Damage I could have avoided had I researched my options beforehand.

2. Build a dream team of doctors.

When I started getting sick and my PCP told me that she suspected I had a “female problem,” I got extremely lucky that a new ob/gyn had just moved to town and she was assigned my case. The average length of time it takes a woman to be diagnosed with endometriosis is 7 years. From the time that my pain became debilitating to the time she had my diagnosed was 3 months. I saw my PCP in July, had my first appointment with her in August which started all the testing, and I had surgery to confirm endometriosis in September. I got lucky. I got lucky not only because I was able to be diagnosed quick but I got lucky because she was an absolutely amazing doctor. I’ve been with her now almost 13 years and everyone else nows how amazing she is and you wait an eternity for an appointment. But she’s worth it.

I wasn’t always this lucky. I’ve had to make a few chances to the line up to create my dream time. The first rheumatologist I saw didn’t believe in fibromyalgia but diagnosed me anyways then drugged me to the point I could hardly remember my own name. The first neurologist I saw seemed to sleep through most of my appointments as he always asked questions on his way out that we had spend the previous 20 minutes discussing. The first gastroenterologist kept telling me to eat more yogurt even though I was suffering with undiagnosed Celiac disease.

If you don’t feel like you’re being heard or treatment progress isn’t being made, there is no shame in asking for another opinion. Heck, demand it. The two most important things for me personally that I want in a doctor on my dream team is 1) I feel that am truly heard and 2) I am an active participant in deciding my treatment plan. Bedside manner is important but not the most important like I thought in the beginning. Dr H (my endo dr) is the warmest, most compassionate doctor on the planet and she has held my hand and cried tears of pain with me over loss and surgeries and cried tears of joy with me over our adoption news. Dr P (my rheumatologist) is a gentle soul. Not overly personal but makes me feel like a person, not just a patient or file and readily makes me an active participant in deciding treatment. Dr B (my pain specialist) has the personality of a wet mop and honestly if he smiles in an appointment I have to wonder if he got lucky that morning but never once has he made me feel crazy or like a drug seeker. He has always validated my pain. I’ve got other doctors but this just shows that there isn’t a cookie cutter mold of what your dream team needs to look like. We would all love to have a McDreamy or McSteamy on our bench but what is important is that you feel like they are on your bench – your team – and take your case seriously.

Chronic Ilness Advocacy

3. Don’t be afraid to speak up.

If you are in the emergency room and you don’t feel as though you are being heard, speak up. Ask to see someone else if you have to. Last year I went to the ER with an early small bowel obstruction. One of the hospitalists came at me with an NG tube. I explained my previous experience with the tube and that anatomically something prevented them from being able to insert the tube properly. The tube would just curl up in my sinus cavity versus descending downward. I was talking but I knew she wasn’t hearing me. She kept saying, “I’ll give you something to calm you down but we’re not skipping the NG tube because you are scared.” Finally, I just said stop and asked to see another doctor. When the other hospitalist came in, I explained the situation and she said no NG tube. Because there had been difficultly before, she wasn’t going to go in blindly and risk perforating something. If 24 hours of NPO didn’t clear the obstruction and an NG tube was necessary, she would consult a surgeon. The first hospitalist huffed out of the room NG tube in hand. The second just smiled at me and patted me on the arm as she walked out.

If you are in an appointment and have questions but the doctor seems rushed, speak up. Make them take time for your questions. It is their job. If they are pushing a certain treatment but you have concerns or reservations, speak up. If you are having a procedure done and are curious about what kind of equipment is used, speak up. If you had an amazing nurse during your hospital stay, speak up. Speak up about the good things and the bad things.

4. Have someone on board who can advocate on your behalf when you cannot advocate for yourself.

As important as it is for you to be a part of your treatment plans and on top of your research game with your illnesses, it is important that you have someone on your team that can call the shots on your behalf. They don’t need to be an expert in the field but they need to know about all your illnesses, your past history, and the medications you are taking. It would also be beneficial if they could go to an appointment or two so they can meet your doctors and get a better understanding of everything that is going on and get some of their questions answered. Also, it is also often very helpful for doctors to get an update on how a patient is doing from someone other than the patient. Sometimes we like to sugarcoat things or leave them out. Not that I would ever do that. Ever. It seems like an easy decision is you are married, have a SO, or are single and have a family member nearby that can help take on this role but if that is not the case, it may seem awkward to ask a friend to take on this type of role (I’m not talking life or death, power of attorney type stuff here) but it is extremely important.

My husband is an amazing advocate and so many times he has stood up and fought for my care when I could not fight on my own. I try to keep an updated list of medications in my phone but when the emergency happened in February, he just grabbed the bucket of medications from the bathroom shelf just trying to try to make sure the doctors had everything they needed. Unfortunately, this bucket contained not only my prescribed medications but basically medications for the whole family which confused the staff even more. This taught me a huge lesson on how I can do a better job of preparing my advocate to be able to do a better job of advocating in my place. These days our cell phones are like a second limb so try to keep an updated medication list, any allergies, a list of doctors you see regularly and their numbers, and a brief medical history (just the high points that emergency personnel may need such as surgeries, etc) and show your BAFF (best advocacy friend forever) where it is located in case of emergency.

 

There are my 4 items essential for any toolkit to be able to advocate for the best possible healthcare for yourself or for your loved one.

What you would add to the list?

 

Stock Images by Turquoise & Palm